MEK Inhibitor Reseach Trial Update
This is just a quick note to thank you all once again for contributing to our recent tax appeal and for helping us to reach our goal of $100,000!
As promised, those funds will be invested in the upcoming MEK (TiNT) Clinical Trial of Trametinib happening in Australia and New Zealand for specific NF associated tumours.
At the end of the campaign period, we had just over $90k banked and we could not be more grateful to our wonderful community, as well as your friends and family for rallying around this initiative. We know how important it is to you, and our partners do too, which is why companies like J Farren-Price dollar-matched donations at the end of June, and others like Gresham Partners and Greg Whitely (long-term supporters of the Children’s Tumour Foundation) helped to get us across the line to reach that magic $100k later in August.
It was at this point that our Board ratified the decision to invest this money into the trial, which has allowed our CEO Louise to formally notify ANZCHOG (Australian and New Zealand Children’s Haematology/Oncology Group) of our contribution.
There are still a number of legalities to go through and paperwork to finalise, but once completed there will be a “set-up stage” which we have been advised will take approximately 6 months to complete. It is at this point that they will begin the enrolment process for children and young adults between the ages of 3 months and 25 years. Initially, the trial will start in three hospitals (The Children's Hospital at Westmead, The Royal Melbourne Hospital and the Queensland Children's Hospital) with the plan to extend to another two hospitals in Australia and NZ.
At this stage we have committed to help fund the first two years of the trial and will review the results every year thereafter. We will continue as long as the results prove to have a positive impact without significant adverse side effects.
We hope that you continue to support our efforts to raise the funding needed and are confident that this trial will be invaluable in helping to advance studies into better treatment options for those impacted by NF not just in Australia, but around the world - giving families the hope they need to battle this unforgiving disorder.
Together we can #conquerNF